A Month of Gratitude - Day Four: Sleep

It’s been roughly a year since my son’s sleep troubles have decreased dramatically. For years, yes, you read that right, years (five, in fact), my son would wake in some sort of heart-rending distress multiple times a night at roughly ninety-minute intervals and they lasted about 20-45 minutes each. To say those were brutal times would be a gross understatement.

It took a long time to finally debug what we think was the root cause; if I told you, you’d look at me like I had three heads. Even our son’s fantastic neurologist took a while before he believed we were right.  But, suddenly, the screaming, writhing bouts of self-injurious behavior…stopped.

The transition from those hellish years to sleeping through the night has not been without some bumps along the way and I’m not sure I believe we’ve fully crossed a threshold yet. But, here we are several months later and we have all finally retrained our bodies to sleep (mostly) through the night. Nik still has nights where he is up for a few hours in the middle of the night, but that’s more often the exception than the rule these days and usually only when something is brewing with his health.

I am extremely grateful that we now have a home health aide here to help us every night during the overnight hours. My husband works nights and I have to be able to function to get Nik ready for school and doctor’s appointments and to manage the day to running of our home which includes managing all aspects of Nik’s educational and medical plans and needs. It is a full-time job and my boss can be kind of, well, a bitch sometimes — especially when she doesn’t get enough sleep!

So we’ve been on cruise control for a while now and I was just starting to feel cocky. Until Super Storm Sandy came along; Nik’s sleep hasn’t been right since. He didn’t have any obvious anxiety from it, but his sleep has definitely suffered. Nik’s gone from sleeping up to nine hours straight through the night to either being awake for a few hours then going back to sleep or, worse, simply starting his day a mere small handful of hours after I’ve gone to sleep.The poor boy was so exhausted all day! I thought (ok, PRAYED) he would nap this afternoon so we could push his bedtime out a little later to help make the transition to Standard Time a little easier. Ha!

Nik came sooooo close to falling asleep on the sofa a few times and then would rebound suddenly. It was an ugly sight to see; the poor child was so dysregulated and exhausted that I described him to some friends on Facebook as being like a malfunctioning robot. At one point, immediately after he had eaten lunch, Nik got very upset because he couldn’t have his ice cream — which he always has after dinner. He started to fray around the edges and tell me he was hungry and asked me to make dinner. Then breakfast. Then lunch. Then dinner. Then ice cream NOW. Then the tears and frustration came followed by kisses and soothing from Mama. Then it all repeated in a seemingly endless loop. By late afternoon, I knew I had to get him out of the house to keep moving. We went to Target where he was…a complete angel.

As soon as we got home, the demands for dinner and ice cream began again in that anxious, perseverative kind of manner. He only ate half of his dinner before deciding he was done.  By six o’clock his body thought it was later (and he’d been up since the wee hours) and he was starting to fall asleep on the sofa for real this time. I helped him don his spiffy new pajamas, got all his myriad meds into him and brushed his teeth before heading upstairs.

Nik never actually made it upstairs under his own steam.

Halfway up the stairs, he stopped, turned around and put his arms up for me to carry him. “No, baby, you need to walk; we’re almost there,” I said. He looked at me and his lower lip quivered. He shook his head NO then sat in the middle of the staircase, laid his head on the stair above where he sat and closed his eyes. He’s such a little stinker. I convinced him to make it up to the top landing before I scooped him up and tossed him over my shoulder.

I think he may have been half asleep before his head even hit the pillow, but as I turned out the light and leaned over to kiss him on the forehead, he snuffled and raised his lips to mine. Resting a palm against his soft cheek, I smoothed his hair and whispered my goodnight. It’s a ritual I started when he was in the NICU so he wouldn’t ever feel alone in the middle of the night. I have whispered those same words every night since he was born. Even on the very rare occasions when I’m away from him, I make my husband put the phone to Nik’s ear and I softly say –

“God bless you and the angels keep you overnight, baby. I love you. I’ll meet you in Dreamland with Papa and I’ll be here when you wake. Good night, little bear.”

Today, tonight, I am grateful for sleep and the rituals surrounding it. For the progress my child has made in sleeping again and for the fact that he is here for me to kiss and snuggle each night. There were so very many scary days and nights in his early life when I thought we might not have this time together.

Sleep, my child, and peace attend thee,
All through the night
Guardian angels God will send thee,
All through the night

Soft the drowsy hours are creeping,
Hill and dale in slumber sleeping
I my loved ones’ watch am keeping,
All through the night

Angels watching, e’er around thee,
All through the night
Midnight slumber close surround thee,
All through the night

 Soft the drowsy hours are creeping,
Hill and dale in slumber sleeping
I my loved ones’ watch am keeping,
All through the night

All Through the Night ~ a Welsh Lullaby often associated with Christmas